Help 4 JHD

JUVENILE HUNTINGTON'S DISEASE

Juvenile Huntington's Disease (JHD) affects individuals that are diagnosed at or before the age of 20. JHD is caused by the same mutation on the same chromosome as adult-onset HD. The mutation results in degeneration of the neurons in the basal ganglia of the brain. The basal ganglia are responsible for motor functions, behaviors, thought processes, and emotion regulation. With the progression of JHD, degeneration of other regions of the brain occur resulting in severe brain atrophy.

About 10 percent of known cases of Huntington's disease are Juvenile Huntington's Disease.

Those with JHD experience similar challenges as individuals with HD; however, they also have a unique set of challenges that often complicates the care they receive. Coordination of movements, behavior changes, difficulty with thought processes, sleep disturbances, and swallowing and speech difficulties are seen in JHD, just as they are in HD. With the onset being earlier in their lives, these individuals often experience a decline in school performance, a loss of previously mastered abilities such as a decline in fine and gross motor skills, handwriting difficulties, dystonia, and seizures in about 30% of JHD patients. There are several other symptoms that aren't widely recognized by JHD providers, but are well-known to the caregivers of these beautiful children. The children and families that are affected by JHD need more support and resources than are currently available. The lack of access to these vital resources makes the battle much more difficult.

UC Davis JHD Research Team

Help 4 HD International is proud to have been able to support JHD research that is taking place at UC Davis, California. This research team is working around the clock to find a therapy for children living with Juvenile Huntington’s disease. For more information on this very important research please visit:

http://jannolta.com/page_3_juvenile_huntingtons_disease_research_update_2016_-_kyle_fink_group_in_nolta_lab

To donate to this research please hit any donate button on our website. In the comment box please write: Help 4 HD Juvenile Huntington’s Disease Research Initiative.

 

 

THIS STUDY IS FOR CHILDREN WHO ARE LIVING AT RISK FOR HD.

THIS STUDY IS FOR CHILDREN WHO ALREADY HAVE SYMPTOMS OF JHD.

VIDEO

Cute little informational video about what a day participating in our study is like. Much thanks to our kids who volunteered to be the actors!

ABOUT THE STUDIES

Kids and teens ages 6-18 who have a parent or grandparent who has been diagnosed with HD are eligible for the Kids-HD study. This is an observational study.

Kids and teens who are already showing symptoms of JHD are eligible for the Kids-JHD study.

More information >

Donate / Fundraise directly! Know that the money is going directly to these studies!

JHD RADIO

Denise Hudgell, RN, the mother of a 10-year-old son with JHD, hosts a radio show for those families and loved ones affected by JHD. The radio show will be a mixture of clinicians and other professionals that directly work with JHD and peer-to-peer interviews. Stay tuned for announcement of upcoming shows. Previous shows are available in the archives.

JHD Peer to Peer Show’s: http://www.blogtalkradio.com/help4hd/2016/06/23/help-4-jhd-live-peer-to-peer  http://www.blogtalkradio.com/help4hd/2016/06/02/help-4-jhd-live-peer-to-peer

JHD Interviews Dr. Kyle Fink: http://www.blogtalkradio.com/help4hd/2016/05/19/help-4-jhd-live

 

Also, check the BlogTalkRadio Shows archives for interviews with Dr. Peg Nopoulos:

  • April 23, 2012 >
  • January 28, 2013 >
  • October 1, 2013 >

Help 4 JHD Brochure

Click on the link below to download a copy of the JHD Brochure.

JHD Brochure